|
||
|
Title: If they are so bad, why prescribe.. At wits end Post by DavidEH on Sep 15th, 2006, 3:49pm So three days ago. I ran out of relpax. I've been calling my nuero and leaving messages, finally got through.. So supposedly, I am not even supposed to take my abortive everyday? Relpax.... Cuz of this, I will not get a refill.. My nurse, made me feel like a drug addict, I'm a 26 year old man, and I started crying on the phone... crying right now actually. She's like, "I discussed this before with you David, you can not take these everyday!" What good are an abortive, if you can't use them to abort? She was going to refill my script, and bump up the pills from 6 a fill to 9, but the pharmacy made it seem like I was abusing the pills. At the most I took were 2 a day. Never above that, And I tried to stretch out the pills which was hard.. I've been on topomax and o2 in the mean time, but I've been in pain, constant pain all day today... yesterday I had 6 HAs (abet I think the top dumbs it down, cuz they were not full blown).. She then tells me, if the pain is that bad David, go to the emergency room, and they will prescribe something to break the HA.. WTF (why won't you)... Then she says take motrin... AM I crazy? She gave me attitude. Obviously I must be there only cluster patient. I can't deal anymore, I'm popping excedrin migraine like its candy, and in the last 2 days I've went through half of my o2 tank... I just had an appointmet alittle over a week ago, and now they won't give me an abortive? Help, what do I do? Are relpax really that bad, that you can't take them everyday? What are my rights? Luckily I have no rifles in my house, cuz honestly that would be that... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Melissa on Sep 15th, 2006, 4:08pm I'm sorry, I do not know about Relpax, but right now I suggest you 1. get off the excedrin because it could be causing HA rebounds and go on Aleve (naproxin sodium) instead. Do NOT go over recommended dosage though. 2. Find a new neuro who is knowledable on clusters. Here is a list of sufferer recommended doctors. There should be one in your state, if not, call one of them that is closest: http://www.ouch-us.org/chgeneral/doctors.htm 3. Go here and click all the links: http://www.ouch-us.org/chinfo1.htm . It will arm you with legitimate info. you can take to your next doctors appt. Good luck and hang in there! hugs, mel |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 15th, 2006, 4:14pm Rhode Island is blank shucks... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Melissa on Sep 15th, 2006, 4:21pm Even if it is, just call one of the doctors closest to you. RI is a small state, so it wouldn't take much to do a few hours drive to a doc who understands and will actually HELP you. It is all worth the trouble, trust me!!! :)mel |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Daddys_Devil on Sep 15th, 2006, 4:23pm Try here http://www.achenet.org/physicians/ |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by BigCoffinHunter on Sep 15th, 2006, 4:29pm I am amazed a neuro would even suggest motrin for clusters. Even worse to make you feel like an addict to a triptan! It's not like you get high from them. Definitely find a neuro who specializes in headaches, and make sure they know about and treat clusters. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Melissa on Sep 15th, 2006, 4:30pm Daddys_Devil, David needs a neuro who is experience in cluster headaches. I believe he already has a doctor. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 15th, 2006, 4:46pm well I just made an appointment with another place, supposedly specializes in "headaches" but that isn't until October... I have an appointment with this problem Neuru on Monday.. Reason why he is a problem neuru... 1. After calling for three days, not getting any thing but a message service, they tell me to go the emergency room (hmmm) or take motrin? Makes sense to me, from relpax to motrin... 2. Never talk to him, only get the nurse. 3. When I had my last appointment with him, I saw him for 4 minutes, honestly maybe 5 minutes... Then it mostly was this bitch of a nurse.... Funniest part is, I had a great experience with him last time, he gave me predisone and actually fought with the pharmacist to get me more imetrex refills... This time, I'm a drug addict... woot woot woot What's an added appointment going to do? I mean it took me a month to get my last one... I feel as if they want some more of that insurance dough... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 15th, 2006, 4:49pm in short though, anyone else have a problem with their triptan? did the doc say not to take it everyday? whats the point of an abortive if you can't take it everyday? again I have o2 and topamax (preventative)... is this malpractice? |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by BigCoffinHunter on Sep 15th, 2006, 4:56pm on 09/15/06 at 16:49:23, DavidEH wrote:
My previous cycle I was prescribed Amerge (a triptan) and told to take it every night. This cycle I was told to hit the zomig spray 'as needed'. I've never been told not to take it every day. I don't know about malpractice, think you would be best cutting your losses and getting a good neuro. 5 minutes is not much for a good workup. My first visit with my neuro this cycle was about an hour, he knew what the problem was, but he still ran through all the tests (made me feel like I was getting a sobriety test, but whatever). |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Bond007 on Sep 15th, 2006, 5:09pm I gotta agree with BCH. A 5 minute neuro visit is really short-changing you and hitting the insurance company up for a pretty penny. I just had my 2nd neuro visit yesterday and my doc spent a good 45 minutes with me, even though we didn't do much except to update him as to how my HA's weren't getting much better on my current course of meds. He really could've just said up the Topamax and here's a script for Lidocaine and I'll see if you if this doesn't work. But, no, he ran me through the paces -- exactly like a sobriety test! LOL! Too funny!!! |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 15th, 2006, 5:10pm I knew it.... Thank you... Just suprised that, you were told to take your triptan every night, and me I was told I couldn't, like I would become a triptan junkie, hey man ... I got these cheesebugers (silly movie quote)..... you got some trippss At one point, until it was found I was alergic (this was after my first appointment last week) they told me to take a vic one day, then the relpax the next... Then I was alergic to the vics, but they never gave me anything else.... talk about idiots... SO, rebounds aside, a triptan a day, won't kill you.... I wish my nurse, or pharmacy knew this... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by brewcrew on Sep 15th, 2006, 5:22pm Half a tank in 2 days doesn't seem like you're using it all that much Especially having been hit 6 times in a day. What size tanks do you have? Suggest to your neuro (if you can) that the Rx be written for Oxygen through a non-rebreather mask at 10 litres per minute as needed for cluster headache. That way you get as much as you feel you need. You tell the oxygen company how much to bring. Then just start sucking it down at the very first sign of being hit. Don't stop until the hit is completely gone for 5 minutes. If you don't have insurance to pay for the oxygen, get ahold of some welder's oxygen. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Daddys_Devil on Sep 15th, 2006, 5:44pm Melissa,please look again at the link I gave.Here is a link to the home page of that site http://www.achenet.org/ A cluster experianced Doc is better than a cluster ignorant neuro.I can't say that all Docs listed there are experianced in CH but they are at least focussed on HA enough to be registered with ACHE |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Melissa on Sep 15th, 2006, 5:51pm Woops! Sorry about that. I just saw the word "physicians" and not the achenet. My bad! :-[ I swear, if I didn't know any better, I would think that I had a mini stroke about a couple months ago. Not only has my speech been screwed up but my reading too. :( |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 15th, 2006, 6:03pm well the doc called in for me to go in for a "demoral" drip... So I am off to the E.R. In regards to the oxygen tank size... The size is about 4 1/2 feet tall, its a big sucker... I have the mask 2, and the script is for 8 lits but I turn it to 15 sometimes.... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Bob P on Sep 15th, 2006, 7:17pm I remember a Saturday morning when the Pharmacist wouldn't refill my cafergot because it was too soon. I really, seriously fought off the urge to jump the counter, beat the shit out of him and steal his cafergot! There's an article in the OUCH library that talks about clusterheads using triptans multiple times a day for years on end with no lasting side effects. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 16th, 2006, 12:13am I'm going to search for that article, if anyone finds it before i do, thanks, link me.. If I find I'll link it... I was wrong, I put down demeral (sp) but I went to the emergency room for a depakote and magnizium drip (sp)... Sorry for the spelling errors, but besides the bruises I have on my arms from a rushing nurse trying to find a vein, and the 8 hours wasted in the ER, whats the point of this drip.. I've been in pain in and out all day, thanks to the Topamax, not really cluster crazy, but migraine crazy.... I am going to look for that info about triptan use.. I would have expected a ER visit to end pain free, but it didn't I am in pain now.. And to think, it feels as if my cycle has switched to migraine... lucky me... does this happen.. 6 weeks of clusters now migraines? |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by BB on Sep 16th, 2006, 1:25am David, 2 Triptans a day is fine. I am so sorry to hear of the hassle you have. Here in Australia a GP can prescribe triptans to his/her heart content, as long as the patient has been advised that recommended dose is 2 a day and occasional extra use is acceptable, but not long time, triptans are there to abort until the preventive kicks in. The preventive regime must kick in within 2 weeks, if not they are not working properly. Best of luck and painfree wishes. Annette |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by lashultz on Sep 16th, 2006, 2:02am As far as the O2 goes, I start at 15 and turn down as the ha subsides. Sounds like you have a M60 tank. But it also sounds like you need to find a different doc. Lee |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by DavidEH on Sep 16th, 2006, 2:03am well I'm just starting week 2 of topomax (50 mg. at the moment)... Hopefully I will be free soon enough... The problem stems from the fact that, my neuru was on vacation when my clusters started in Early to mid August. I was prescribed Abortives from my Primary Care Doctor (Axert, then Relpax and Oxygen) but no preventatives.... I wasn't able to see my Neuru until a week ago (last Thursday, when he started me on a preventative). The problem only occured when the nurse was calling in a refill, and the pharamcy alerted her on my abundancy of use of the relpax refill. In August and September alone, I had 18 pills ( 3 refills). Some were two days, never more. When first prescribed the pills, my Primary care physician said it was okay to take at most two a day, and it said it on the label. when I first experienced a problem, with getting early refills, I learned to ration, (6 pills for 6 days, sometimes taking 2 a day, even if that meant none of one day).... Maybe that's the problem, I'm past the two week point? But what about chronics, do they use triptans at all? Another thing kinda rattles my bones, My neuru stated that his daughter has these headaches... Why would I be suffering this then? Wouldn't he have a better understanding? Or could it just be more bullshit? Well, I have another appointment on Monday, here's hoping to it. I feel like I am suffering though... But from rebounds, not from the relpax, but from the excedrin, and other shit i've taken in the last three days in absence of the relpax.... What is wrong here.... Nite all and thank you all .... |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by BB on Sep 16th, 2006, 2:12am Hi again David It sounds like the problem was that the preventives were not started at the same time your primary doc gave you the triptans. If they were, within 2 weeks you would have been much better and wouldnt have needed as many triptans. Maybe you need to explain that to the nurse and to the insurance company. Hopefully the preventives are going to kick in real soon for you and then no more such dramas. Sending good vibes and painfree wishes. Take care Annette |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Bob_Johnson on Sep 16th, 2006, 6:43am Headache. 2004 Feb;44(2):178-82. Frequent triptan use: observations on safety issues. Robbins L. Department of Neurology, Rush Medical College, Chicago, Ill. 60062, USA. OBJECTIVE: To examine the safety of frequent triptan use over extended periods. For a small group of patients with refractory migraine plus chronic daily headache, triptans are effective. METHODS: This retrospective study primarily evaluated the cardiac safety of daily triptan use in 118 patients and, in addition, hematologic tests were assessed. Each patient had utilized a triptan for a minimum of 4 days per week for at least 6 months. Patients with rebound headache had been withdrawn from the triptans. Most patients (97 of 118) averaged 1 tablet daily; most would occasionally go for several days without a triptan. Forty patients had taken a triptan for 6 months to 2 years, 37 patients from 2 to 4 years, and 41 for 4 or more years. RESULTS: Routine hematologic tests were performed periodically on all patients, and no abnormalities were attributable to triptans. Almost all patients had an electrocardiogram, and no abnormal electrocardiograms were felt to be related to triptans. Cardiac echocardiography was performed in 57 patients. The 10 abnormal echocardiograms were not due to triptans. All 20 cardiac stress tests revealed normal findings. Adverse events were minimal; 9 patients described fatigue due to triptans, and 5 had mild chest tightness. CONCLUSION: This long-term study of 118 patients indicates that frequent triptan use may be relatively safe. PMID: 14756859 [PubMed ] ==================================================================== Funct Neurol. 2000 Jul-Sep;15(3):167-70. Sumatriptan overuse in episodic cluster headache: lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis. Centonze V, Bassi A, Causarano V, Dalfino L, Cassiano MA, Centonze A, Fabbri L, Albano O. Dept of Internal Medicine and Public Medicine, University of Bari, Italy. This observational study was designed to examine the pattern of sumatriptan use in patients with cluster headache using more than the recommended daily dose of subcutaneously injected (s.c.) sumatriptan. Thirteen patients suffering from episodic cluster headache were asked to record the characteristics of their attacks and drug intake for 1 year. All reported a high daily frequency of attacks (more than 3 per day) and the related overuse of s.c. sumatriptan. The results show that the overall incidence of adverse events among patients receiving sumatriptan injections for the treatment of cluster headache is low. The extended administration of this drug in episodic cluster headache did not result in tolerance problems or tachyphylaxis. Only 4 patients experienced minor adverse events and recovered more slowly than the others. They suffered from migraine without aura and cluster headache, and showed a family history of migraine. Even though they must be viewed with caution, due to the observational nature of the study and the low number of patients included, these results suggest that the profile of sumatriptan may differ in cluster headache compared with migraine. PMID: 11062845 |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Bob_Johnson on Sep 16th, 2006, 6:44am 1. Search the OUCH site (button on left) for a list of recommended M.D.s. 2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice. 3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate. 4. http://www.achenet.org/physicians/ On-line screen to find a physician. 5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by mynm156 on Sep 19th, 2006, 7:56am Hey David, This is just stupid. I have had to set more than one pharmacy straight before and I havefired more than one doctor before. I didnt see what Dosage U were on. 20 or 40? If you are on the 20s ask for 40 and cut them in half. I know of several people who do this with trex. Good Vibes MYNM156 |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by Karla on Sep 19th, 2006, 2:49pm Besides an abortive to stop the ch once it starts you need a preventative medicine that will prevent them from occurriing at all. Some examples are verapamil up to 960mg, lithium 900mg, if they don't work seperate try them together. Sometimes that works. Indocin 50mg 3/day. Neurontin, Tegretol, Elavil(amitriptalin), Zyprexa, ... Abortives are good. I used to get hit 8x/day for years. Oxygen is great to be used to abort all ch. and safe also. Then O2 lost its effectiveness for me. My insurance only allowed me 9 imitrex a month. My dr was allowing me that a day. I got lots of free samples and he wrote a letter to the insurance company explaining my dilema and that they needed to allow it. They did but the pharmacist was concerned because it has only been saftey tested for use 4x/month. I told her I didn't care and she got me my meds and It was great from that point on. However they kept looking for a preventative for me so I wouldn't have to use so much imitrex since it isn't the best thing for you to use it so much. I finally found something that worked and I am no longer taking imitrex for ch. I do still take it for migraines but Im glad my dr stuck up for me and wrote the letter to the insurance company. |
||
|
Title: Re: If they are so bad, why prescribe.. At wits en Post by unsolved1 on Sep 19th, 2006, 9:39pm I'm a heavy Trex user 8) It works everytime !! I might need it 3 - 8 times per day ... and I've been using it that way for years. I'm still alive & kickin' ;;D It's gonna take more than that to kill me [smiley=bigguns.gif] I know it's not the same as Relpax, and I'm not recommending that anyone else use it that much ... but I wanted to mention it. I saw you mention O2? Is it effective and if so, why even need any Triptan? Ever tried the Trex ? PF Wishes UNsolved PS. Glad to hear you're seeing a new doc. Sounds like the old neuro didn't understand the severity of clusters. They have to be dealt with ... now. Cluster patients should be able to contact their neuro(s) @ or a neuro @ anytime (24/7/365)....IMO :) |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |